Thursday, March 22, 2012

It's Not My Fault

I will admit that I don’t know much about the Buddhist notion of Karma.  My superficial understanding is that it has something to do with payback. And when I found out that Oskar had a chromosomal deletion, I felt like it was Karma.

The doctors assured me that I couldn’t have caused the deletion by eating or drinking the wrong thing. The problem had probably occurred at conception. Some flukey thing that no one could have caused, stopped or predicted.

So I looked deeper. Maybe I was being punished for being ambivalent about having a third child. Maybe it was retribution for something I did in a past life. Or something mean I said in high school. Clearly, it was my fault somehow, on some level. A Karmic level.

When I told my therapist this ( I’m from California, of course I have a therapist!) she sent me to a psychic she knew and trusted. She explained that she did not usually send her patients to a psychic, but she knew that as many times as she told me it wasn’t my fault, I was never going to believe her.

The psychic told me that Oskar had been in an accident in his most recent past life. Paralyzed from the neck down. With a breathing tube. He had been very angry and unhappy, and had left that body as soon as he could. She told me that when he reached the astral plane, instead of processing his life and his anger, he has basically “ jumped the line” and jumped into a new body as soon as he could get one. The universe had put him in another imperfect body so that he could learn the lessons he has refused to learn in the previous life.

Ok, so you can laugh at that story, or believe it or whatever you want, but here’s the moral. Here is what I came away with.

We all have our own Karma. We are all here on our own journey, to learn our own lessons. Oskar’s life is HIS journey. Who knows what he can do, or achieve, or learn in this life? For me to think that his challenges are all about me is an amazing bit of narcissism. My life is affected by him, for sure. He has changed the way I see the world. But for me to insist on believing that his whole existence is some kind of lesson for me belittles his importance to the universe.

And that it how I came to believe that it is not my fault.

Weird side note: Oskar was born with what looks like a tracheotomy scar on his neck. Like the kind of scar that would be left by say, a breathing tube. Doctors ask about it all the time. No idea where it came from.

SFX: spooky music. 

Thursday, March 8, 2012

A Communication Device We Can All Afford. Paper.

Oskar is non-verbal. This is fancy medical language that means he doesn’t talk. At least not yet. It’s hard to know exactly how much he understands, but I really do think he understands words like “bath” and “hungry” and “Sesame Street”. I lose him when I discuss the finer points of politics, but with what’s going on right now in this country, do any of us really get it?

About a year and a half ago, we got Oskar an I pad so that we could try some communication apps.  I found a good, simple, inexpensive app called icomm (I think it was $9.99). You can download your own pictures and voice and it gives the user a choice of either two or four objects. When you touch the object you want, it expands to fit the screen. Pretty cool, but with Oskar’s motor planning issues, even touching the screen in the right place is challenging.

So we have gone low tech. At school, they started using pictures of toys he liked and seeing if he would use eye gaze to choose the preferred toy. That kind or worked, but since he was picking between two things he liked, it was hard to be sure he was really showing a preference. So they started showing him pictures of a thing he liked next to a picture of something boring, like a sock, just to check.

The verdict: He prefers toys to socks.  

We have also been using pictures like this at home. Pictures of his drinking cup, a bowl of food, toys he likes. It kind of worked. I think the objects are a little bit abstract for him though. So this week we decided to take pictures of him with the object. Oskar drinking out of a cup. Oskar taking a bath. Oskar playing with his Ipad. We printed them out and bought a cheap laminator at Target and it’s really working. Now we can show him what we are going to do next, like take a bath, or get on the bus, and he can tell us what he wants. He can look at the pictures of his highchair or his special tomato chair and choose where he wants to sit. He can tell me if he wants to watch Elmo or Bunnytown. He can pick between peek-a –boo barn or the Smule piano app. The other day he even told us he wanted a nap by gazing at a picture of himself in bed.

Master of his own destiny!! A little bit, at least.

I am hopeful that someday he will be able to use something a little more high tech, but this feels like a good place to start.

Sunday, March 4, 2012

The Guilt

The Guilt

One of the hardest parts of being a parent of a child with special needs is the guilt that you are not doing enough to help your child.

If you are doing a dairy-free diet, there is always someone doing a dairy free, casein-free diet. If you are doing 3 days of physical therapy a week, the lady next to you is doing 5 days a week, and 6 hours at home. There is always someone who knows way more than you about diet, and supplements, equipment or funding.

There is always, always the feeling that there is more to know than any human can possibly learn. And that if you were just doing it right, your child would be better off.

At least that’s the way I feel, and I think I do a lot.

One of my fears about writing this blog is that I will somehow add to that feeling for some person. That they will read something and feel guilty for not acting on it right away, or that they didn’t already know it. That is not my intention.

I just learned to meditate, and in my class, my teacher explained that in the Vedic tradition of meditation, the mantra we say is meant to be like a seed. A Bija. It is not meant to take over your thoughts, but to gently rest in the back of your mind.

That is what I would like this blog to be for people. A seed. I would like for people to read it, and maybe act on it, or maybe 5 years from now, when they are ready, they remember something I mentioned and act on it. This blog is here forever, as far as I know, and is meant to be a resource.

If a year from now something I said resonates with you, you can come back and read it again. 

Saturday, March 3, 2012

Vaccinations in Amsterdam

I have noticed that I have some followers in The Netherlands and for some reason, I feel the need to talk about vaccinations in the Netherlands today. In particular, the Pertussis vaccination (Kinkhoest).

I am not paranoid about vaccinations. Actually, let me correct that.  I did not used to be paranoid about vaccinations. My first two children were vaccinated on the schedule their pediatrician recommended.

But, Oskar was born in Amsterdam and received all of his infant vaccinations there. After his third vaccination for Kinkhoest,  he started having seizures. When I dug around and asked, I found out that in the Netherlands, they still use the whole cell pertussis vaccine. This is an older version of the vaccine. When I asked the doctor at the Consultati Bureau why, she told me they use the acellular ( newer, safer) version on older kids, but the old one on infants because it worked better.

I have told many doctors here that Oskar was vaccinated with whole cell pertussis, and most of them, although completely in favor of immunizations, couldn't believe they were still using it.

I don't know if they are still using it in the Netherlands, but you can Google whole cell pertussis and find tons of article about links to seizures and even if that's not true, it has a much lower rate of efficacy than the newer version.

I wish I had known then what I know now. I didn't ask what they were vaccinating my child with. I trusted doctors more then than I do now.

Just an FYI.